Ellie's Medical Conference Fund

Sweet little Ellie!

Ellie is currently only one of 11 in the world to be diagnosed with the KANSL1 gene mutation version of Koolen de-Vries Syndrome. We call them "Kool Kids" :)  Ellie also has life-threatening,  uncontrolled Epilepsy which occurs in about 50% of Kool Kids/Adults.  Her seizures have gotten worse lately and she has spent  15 days in less than 2 months in a hospital.  During this time, her Mom Christine has had to miss countless weeks of work/income to be with Ellie 24/7.  Not only while in the hospital but at home building her stamina/strength back up so she can get back to school and enjoying her childhood. This sweet girl's sparkle charms everyone and her smile lights up a room!  It's  just not right to see her in a hospital bed.

This is where we really need your help for this sweet family...

Ellie, her Mom, Dad and Brothers would like to travel from Texas to North Carolina this July for the Koolen de-Vries Syndrome Conference. They will be able to learn more about Ellie's rare syndrome, attend many informative seminars, meet other families facing similar situations, and even get to meet the two doctors who discovered this Syndrome, Dr. Koolen and Dr. de-Vries! However, due to an increase in Ellie's Status Epilepticus (seizures that last longer than 30 minutes) which have resulted in many hospital stays, this amazing family needs our help!

Any money that is raised above and beyond the cost of the conference trip will go toward expenses from Ellie's numerous hospital stays/parents loss of income/Ellie's medical bills.  Your generosity toward this sweet little girl and her family is so appreciated! Please share this page and spread the word to help sweet Ellie travel to NC to meet friends who are just like her!

Also, please check out Ellie's facebook page, https://www.facebook.com/EllieKoolKid for more information and to join others in Cheering for Ellie!